AnotherBrick Wall (aka) Endo .. Where next?

Hello All

I posted a message on the forum (Dazed and Confused), a few weeks ago, and received so very welcome advice and support.

I am now Dazed, Confused and Angry. Sorry for the long post, but as you all know its complicated!

My GP tested me for various conditions, TSH and TPO (Labs will not test for T3 and T4 as my TSH was within range). My B12 was below the range and the Vitamins that she tested for where in the low to mid range. She did not recommend B12 injections.

My TPO was very high. She said she could not treat antibodies, but to come back in 3 months for repeat blood tests and to keep an eye on my thyroid as antibodies as, it will eventually fail. She referred me to a NHS Endo, but as the appointment is not until the end of July, and I was concerned that they would not test for T3 and T4, and after reading many posts that I the appointment would be with an Endo more exp with Diabetes rather than the thyroid. I decided to enquire about having tests via my BUPA cover and they recommended a local Endo and I would be able to have my T3 etc tested.

I went to the consultation, with my symptoms timeline, details on my meds and vitamins I am taking together with my list of blood tests results from the GP.

My heart sank when he started to tell me that many women have high antibodies (he re quoted the statics a few times to me), some have thyroid problems and some have none (most probably they don't know if they have a problem as the labs wont test them). I said that this does not make it right and that many of these poor women are probably suffering like me with symptoms.

He could not answer why my B12, despite being fit, a non smoker, social drinker with a healthy diet, was so low and why my other Vitamins were low. But he said that having taken vitamins that my B12 level was now OK as it is within range, (I am taking quite a high dose sub lingual meth B12, and B supplement). Vitamin D, ferritin, folate, iron, selenium. I said that it is not OK as I am having to take lots of Vitamins, so I am treating the symptoms not the cause!

Then came the immortal phrase 'you might just be one of those people that the medical profession don't have a diagnosis for, and anomaly!' I heard that from a Rheumatologist after a supposed diagnosis of a reactive arthritis that meant I could not walk properly for many years after a blood infection.

He has now given me a letter that he has written to my GP saying basically he does not know what it is and I he feels that I do not have any underlying metabolic or endocrine cause for my symptoms,and high antibodies are not to blame and quoted the Wickham Study which means that I have a slightly increased risk of my thyroid failing. Funny that, my GP told me it would fail eventually. He does consider that I need any further investigations and can my GP please help me manage my symptoms as best she can.

Apparently there is not medical cause so how can I have symptoms?

He has said I can go back for a further consultation, which I will as I have paid for this.

Should I be asking about testing for my adrenals, pituitary gland? I have thyroid symptoms during the day, but a night I feel so dreadful, so low I feel that I don't want to go on, but this mostly passes when I wake. I have had about 25 years of autoimmune problems, which started with joint problems after taking anti malaria tablets or it could have been a virus?

I have some improvement in my symptoms due to the help and advice with regards to Vitamins that I have received here from the forum, for which I am very grateful. Thank you.

I have posted the blood tests below (I have had tests on 3 different dates)

6 Feb 2015 - there were many blood tests, but these are the ones that were flagged up - I tested negative for celiac, my CRP and my rheumatoid factor is normal.

Plasma viscosity -1.73 mPas (1.50 - 1.72 mPas)

Mean corpusc. haemoglobin{MCH) 32.8 pg (27.00 32.00pg)

Mean corpusc. Hb. cone. {MCHC) 352 g/l (310 - 350.00g/l)

Serum Vit B12 166pg/mL (180.00 - 900.00pg/m/L)

Serum Ferritin 108 ug/L (29.00 - 470.00ug/L)

Serum folate 6.4 ug/l (4.40 - 20.00ug/L)

Serum C reactive protein level 1mg/L (<6.00mg/L)

SE Thyroid peroxidiase Ab conc >1000 IU/mL <100.00IU/mL

Serum TSH level 1.2mU/L (0.27 - 4.20mU/L)

5 March 2015

Serum vitamin B12 - 407 pg/ml ( 180.00 - 900. 00pg/mL) (this is after taking B12)

Intrinsic factor antibody - Negative

AUTOIMMUNE PROFILE -NFA

Anti-Nuclear antibody -Negative

Anti-Smooth muscle abs -Negative

Anti-Parietal abs -Negative

Anti-Mitochondrial abs -Negative

Anti- LKM abs -Negative

Plasma viscocity - 1.68 mPas (1.50 - 1.72mPas)

Serum TSH level - 0.78 mU/L (0.27 - 4.20mU/L)

5 June 2015

Free T4 -16.89 (1 2- 22)

Free T3 - 4.8 (3.1 - 6.8)

Thyroid stimulating hormone - 1.070 (0.1 - 5.00)

250H Vitamin D - 45.6 States that 25 - 79 is borderline ranging to insufficiency - I am taking Vit D

Zinc (serum) - 16.8 (11 - 24)

31 Replies

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  • Hezziet, Wouldn't it be nice instead of telling patients 'it's not your thyroid' doctors bothered to find out what is causing their patients to feel so unwell. It shouldn't be up to patients to cast around looking for reasons.

    Your June results are euthyroid. Mine were also euthyroid, not quite as good as yours, but I felt like I was dying and antibodies were much lower than yours. I had a partial thyroidectomy to remove a nodule and didn't feel any better. 3 months later after a completion thyroidectomy symptoms, which the surgeon insisted non-thyroidal, pretty much disappeared. I honestly don't think any credence is given by the medical profession to just how debilitating Hashimoto's can be, even when bloods aren't abnormal.

    Other than optimising your vitamins and minerals the only suggestion I make is to see whether a gluten-free diet helps reduce the Hashi flare ups and antibodies. It helps a lot of people manage Hashi's but doesn't work for everyone.

  • Hi Clutter

    Many thanks for taking the time to reply. Seriously, if I didn't have everyone's help here I might be in a very different place now...

    I had not come across Euthyroid before. Bet my GP wont recognise is as a condition if I mention it to her, she did not like the term 'Hashimotos' After a brief on-line search I think it means my T3 and T4 are a bit high/low, but my TSH is normal?

    The private Endo I have just seen did a brief physical exam of my thyroid gland and said it was fine.

    I don't eat much gluten in my diet, and after reading on the forum about it, I have tried a few weeks not eating eat, although I believe that it make take much longer for it to have a positive effect on the antibodies. Is there much evidence based research for this, or is it purely from peoples experience?

    I have been on HRT, which I am having a break from as I am not sure if this is contributing to my high blood pressure and could be effecting my antibodies as it contains Oestrogen and Progesterone? But this is resulting in me feeling even lower.. just cant win. Came off it before twice for a few weeks to see if it would help but made not difference to my blood pressure readings, and GP said it would not take long for it to come out of my system so it cannot be the reason. I just seem to go around in confusing circles.

    After reading more about the adrenal s I can identify with many of the symptoms, so I was thinking of asking Endo for a test?

    Is there any advantage of taking NDT etc with my symptoms.

    Apologies for so many questions, and hope the post is not too muddles,, difficulty even spelling some words today...

  • Hezziet, euthyroid means TSH, FT4 and FT3 are 'normal' ie 'it's not your thyroid'. UK doctors are very iffy about 'Hashimoto's' and prefer thyroiditis, chronic thyroiditis or autoimmune thyroiditis - a rose by any other name.

    I think there is research into the benefit of gluten-free but I don't have links. Many members find benefit and it is advocated by natural practitioners.

    I really don't know whether NDT will help if your symptoms are due to antibodies rather than being hypothyroid. Suppressing TSH can help suppress Hashi flare ups and antibodies but might make you feel over replaced which is very uncomfortable.

  • Some say that a gluten free diet is advisable for anyone who suffers from ANY auto-immune disease, because intestinal permeability (leaky gut) is common in sufferers in every auto-immune disorder. I have Hashimotos and feel much better since cutting out both gluten and dairy.

  • HRT can cause high cortisol

  • Hezziet, why don't you just order either NDT or T4 on your own and test it out? I'm not sure the supplements will work as long as you are ill.

    This is a possibility:

    suzycohen.com/articles/meth...

  • Hi Heloise

    Thank you for the reply.

    I am trying to take an informed and safe route back to some sort of balanced health, as suggested by my GP and the posts on this forum by the admins always suggest getting your bloods done first to rule in or out certain conditions.

    My GP and Endo have not been any help with the exception of giving blood tests and ruling out certain conditions, but then say sorry we cant help you, we don't know what it is and your very high antibodies aren't the cause.

    So possibly more drastic action is now required by myself.

    On my previous post one of the repliers had very similar symptoms to me with autoimmune conditions, and she found that NDT made here worse as she discovered she had adrenal problems. So I was hoping to rule this out first. I have heard varying things about T4, good and bad.

    The more I read and research I discover that it is all very complicated, and that there is no 'one size fits all' approach to medicating etc when it comes to thyroid/antibodies symptoms.

    I will look at the link, thanks again.

    Best

  • T4 is levothyroxine, which I assume you are already taking? This converts to T3 in the body (allegedly, although some people can't convert). T3 is also available as synthetic hormone, and then NDT which contains T1, T2, T3, T4 and calcitonin, the same hormones as produced by yoru own body in normal circumstances.

  • Sorry, just read a bit more, didn't realise you weren't on any meds.

  • Have you heard of that book "Stop the thyroid madness"? If not you van go on there website and check it out it will give you so much great info on a lot of what you are asking about. sttm.com I wish you much luck my daughter had very high antibodies and they diagnosed her with hasimotos

  • Hi Lori559

    I have been researching their site more frequently in the past few weeks, I often turn to the Thyroid UK site first.

    Through process of elimination with tests and research, I am nearing to finding out what my condition entails. My GP and Endo do not recognise Hashimotos, so no help there.

    Next step might be to get my adreanals tested, but unsure about this (lots of info on this on the STTM site), and find a GP in Bristol who can help me.

    Thanks for your help and advice... what would we do without each others support?

    Best

  • There is a wonderful and very helpful Facebook group called FTPO (for thyroid patients only) they also have pages for adrenals and other things.

    Regards

  • Many thanks I will check this out

    Best

  • Hi I would use blue Horizon ( finger prick) for T4 and Free T3 then if appropriate see another Endo but research carefully and check treatment also with their secretary.

    Best wishes,

    Jackie

  • Hi Jackie .. thanks for the advice. I believe my Private Endo has tested for these and I have posted them, unless I've got confused about this?

    Its finding an Endo that's going to help me with the Hashis, as the last one dismissed my antibodies outright. I am due to see an Endo via the NHS at the end of July, but might just end up with the same Endo I have seen as he works at the NHS hospital where my appointment is, and from what I have read, many endos hold the same view on antibodies etc.

  • Hi Sorry you have, FT3 a bit low, could make a difference a bit higher. Just come out of hospital so foggy!

    Jackie

  • Hi Jackie

    Thanks for taking the time to reply despite having just come out of hospital and being foggy..hope it clears soon for you.

    Learning more about FT3 etc, Endo does not think its a problem as he says he does not have to see me again, unless I want another appointment.

    Think I will have to contact Thyroid UK to get a list of suitable docs in Bristol who will treat me.

    Best

  • Hi I would definitely go elsewhere. I have learnt to never stay with any doctor not happy with.Research carefully though. Endo best if possible but private doc does not usually need a referral , although GP will not help with drugs, bloods etc then.

    Best wishes,

    Jackie

  • Did you ask for a trial of thyroxine. I asked my gp who referred me to an endo. I was euthyroid but had symptoms. It helped that I could identify family with hashimotos too. Can you? I'm now on a three months 25mcg of thyroxine trial.

  • Hi Halinka

    Thanks for the reply. My GP gave a stern reply when i asked about treating my antibodies. 'I cannot treat antibodies, there is not really anything else I can do for you'. So I don't think there's going to be any help there.

    The term euthyroid is new to me, so researching this. My GP did not believe in the term Hashimotos as she doesn't like giving things a label! Thats why I tried the private Endo route.

    My late father had a thyroid complaint, extremely dry skin and problems with his heart later in life. I listed this in my symptoms timeline, and mentioned it to both my GP and my endo. I suspect my mother might suffer too, diabetes, heart intolerance, dry cough etc.

    Best

  • Your doctor is really not very good so I would look for a new one. I think that most people with high antibodies who are treated with levo or t3 find that their antibodies reduce.

  • Hezziet, I can't add much to the advice that others have given you, except to say that you might like to take a B complex with that B12, because the Bs all work together and need to be balanced.

    Vit D3 works with magnesium (you're more than likely deficient in that), zinc, (yours is low, anyway) and vit K2. So, adding those would probably help.

    Isn't it pathetic that the so-called 'specialists' know so little!

  • Thanks for the reply. I am taking a B complex, (sorry don't think I explained this properly in my late night rant)!

    I am fortunate that in Bristol we have lots of good local health food shops, not just the chains.

    A very informed young lady who happens to have thyroid problems after pregnancy works in one of them, and they have an extensive range of good quality vitamins etc. She is being treated with Lenvo, but i believe her TSH tested for thyroid problems. I am going to see her today with my latest results for more advice.

    I was hoping the private Endo would do more tests for other vitamins etc, but he didn't seem to place much importance on them (madness these keep us alive and well), and was not duly concerned about my very low B12 as I had it under control!

    My blood pressure was sky high, which he quite rightly was concerned about. Much of it was due to the stress of the possible diagnosis after years of suffering symptoms, and my (confirmed) doubts about the usual endo rebuff that I might receive. Both he and my GP cannot understand such high readings despite taking slow release blood pressure medication. Not overweight, fit, always had healthy diet, chest x-rays clear, cholesterol slightly high probably due to the high blood pressure, clear ECG tests. Maybe the answer is just under their noses - very high antibodies?

    I will enquire about magnesium and K2 (I was reading about these on the forum and elsewhere last week). I have been taking D2, but after research have discovered that D3 is less toxic and more effective.

    This lack of help and knowledge by the so called NHS 'experts' does not surprise me. My brother has terminal cancer and although the NHS has not 'held the gun', they have certainly helped pull the trigger, with miss diagnosis and missed diagnosis, so what chance do we mere Hashis sufferers stand?

    I have can have a follow up appointment with him, and after reading more about adreanals and the side effects I wondered if this was something worth pursuing.

    Thanks for your help and support and for just listening.

  • multi-vitamins and b-complex probably don't have sufficient B12 in. Take something like Jarrow's B12, sublingual 5000mcg, to boost it. I'm sure it will help.

  • Hi. Doesn't the so-called caring medical profession make you mad. Actually they make you feel like you are going mad and imagining everything! Having read your post I wondered if you have ever been tested for lupus - I may be totally wrong here but my daughter does have lupus and hers started after taking malaria tablet. I am sure that was not the cause but the trigger. I have autoimmune hypothyroidism which made her more susceptible to getting an autoimmune condition. A lot of her symptoms are the same as mine when I am not being managed properly - which happens a lot because my GP keeps trying to lower my thyroxine dosage. I ended up taking her to Paris to the American Hospital to get her diagnosed as it was so awful here trying to get someone to listen. Once she was diagnosed I got her referred to the unit at Guys & St Thomas and they are brilliant.

  • Dear lesleypearson

    Yes they make you mad and to feel silly for trusting your intuition about how you feel and what might be the causes.

    I am not a stupid person who wishes to be ill, I am in the whole a strong, independent person with a questioning mind. Before taking the anti malaria tablets I had no problems with my health (besides tonsil problems and going deaf in my left ear after suspected German Measles).

    After research I have unearthed many symptoms connected to a particular anti malaria tablet. I don't not suffer many of these but I think my medication was different to these reported on, but I remember seeing an Army doctor on forces TV talking about the very similar symptoms he was suffering to me. Sadly this was before the days of the internet etc, and I have failed to find any reference to him or his research. I know other inoculations are linked to thyroid problems.

    I have been diagnosed with nothing yet, except high antibodies which my GP and Endo fail to recognise as a condition. Although I have had many serious autoimmune conditions, that once again the medical profession have failed to diagnose and have just treated the symptoms.

    I am sold glad you have managed to find someone to help your doctor, albeit in another country just so that you can get help on the NHS. This is my quandary, where and what next?

    Think we all deserve a medal for our dogged perusal of help, despite feeling so low and unwell.

    I am being to thing that I might have to chain myself to the railings of Downing Street to bring this to the establishments

    Best

  • Sorry meant to say in my reply that my GP did a blood test for Lupus and I tested negative.

    Best

  • Hello Hezziet, I am sorry you are suffering with this and that the docs are so unhelpful.

    I am new to the list and my situation is similar to yours, but I am a bit further on as my TSH is now raised enough for my GP to have given me a trial of Levi which is working nicely, though needs adjustments still.

    I understood that the antibodies will not go away and that eventually your thyroid will pack up and this will start to show in the other blood readings.

    I have had hypo symptoms for at least two years, but antibodies only showed up in tests done for a different condition last autumn, though that consultant (yes consultant) didn't make any reference to why they were high even though she mentioned it in passing in her letter. I picked up on it and another consultant I see for asthma agreed they needed retesting. Soon after, the GP ran tests and thank God the TSH was up, this is the trigger they need to get them moving. I think my GP is good becasue she agreed a trial of Levothyroxine based on raised TSH, antibodies and multiple symptoms. I am feeling much better.

    I was also Vit D deficient (17.5) and she has treated that too with a huge loading doses and now daily supplements.

    I am a newbie to this but would encourage you to look after your health as best you can with plenty of sleep and rest, vitamins supplementation and other self care and to hope that the TSH goes up!

    I would also say that a good GP may be worth much more than a bad endo!!

    It is worth trying to be patient with a GP, mine wants to take everything a step at a time and I have felt frustrated sometimes having to wait and have more tests taken when I know that I have been having serious hypo symptoms and I am also the one trying to live with them, she is not! She wants each rise in dose of lego to be testes after two months and this is hard too when I can see that I will need quite a bit more until a balance is achieved.

    She also agreed to have the thyroid scanned as I have had long standing (two + years ) of a feeling of pressing on my necks here the gland is and difficulty swallowing which has been checked by my ENT consultant who has scope the throat and says swallow is fine. Scan shows lumpiness and swelling.

    Perhaps if you have had this symptom too it would be a path for getting more investigations done?

    Good luck and let us know how you are getting on!

  • Hezziet, I also have high blood pressure, longstanding, and wonder if the thyroid disease causes this?

  • Hi Travelling

    After my research I believe that this is one of the symptoms, but my B12 was below range too.

    I have stopped taking my HRT as this can contribute to high blood pressure, but I have done this before for a few weeks and it had not effect on my readings and the GP told me that the HRT comes out of the system quite quick so if this was the cause then it would make a difference. But my blood pressure was going up before I started HRT.

    Ever decreasing circles!

    Best

  • Forgot to mention that if you have high cholesterol it can be due to un(der)treated thyroid.

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